High grade pre cancerous cells, I'm petrified. Please talk to me

[Midnightsbecomemyafternoons]

I've just had a call regarding my most recent smear, I have to go to have a biopsy etc next Thursday. High grade dyskaryosis.

I'm shaking. I have three small children, one is disabled and one just a baby.

Please, can you offer me some words of reassurance from personal experience or even anecdotally.

I have terrible health anxiety and this is my worst nightmare. I can't stop crying.

Posting here shamelessly for traffic.

I also had CIN 3 about 20 years ago. Two treatments of freezing them off and no probs since. Please try not to worry 💐

Is it really common for somebody to have a high grade dyskaryosis result after a clear smear then? I can see that abnormal smears are super common, I'm just surprised that it can leap from 'clear' to 'high grade dyskaryosis" in just three years.

That's a very fast progression for something that is thought to be slow growing isn't it?

Eeeek! That's mad! I'd be morbidly fascinated & torn between seeing & not seeing my lady-plumbing. How things have moved on. My recovery ward circa 85 was a Nissen hut type building built by German POWs! When the nurse removed the yellow wound wadding it was like a magician who pulls a copious length of hankies out of his sleeve.

• posted too soon.

What I was trying to say, albeit clumsily, was that i thought with regular smears every 3 years if there were abnormal cells they would be detected whilst still low grade as opposed to jumping straight from a clear smear to high grade dyskaryosis iykwim.

It’s very unlikely to have developed into cancerous cells.

It did happen to me though when my dses were 3 years and 15 months. Not going to lie, it was a really tough time but I had a radical hysterectomy surgery which removed all of the cancer and I’m still fit and well 17 years later and my dses are all grown up.

Don’t want to frighten you more but I hope my story can help you see that even if it is cancer which is very unlikely, it is treatable for most women.

Good luck for Monday, good to get things moving as quickly as possible.

I’m 28, second smear came back borderline cell changes and high risk hpv. Had the colposcopy and she said it looks like high grade, either cin 2 or 3. I’ll just have to have the LLETZ procedure when I get the official biopsy results.

I can’t lie, I haven’t worried about it pretty much at all since I got the initial letter. It’s not cancer and untreated, there’s something like a 30% chance cin3 will turn into cancer after a period of years. the risk in treated women is minuscule. You’ll be fine and so will I! It’s the procedure I don’t like!!

Please listen to this wise poster.
I've had high grade cells removed- procedure was easy and painless. The colposcopy was more uncomfortable than the actual procedure. I've since had all clear smears and three children.
Please do not panic- you really don't need to.

Smears are not checking for cancer. It's checking the health of your cervix. Biopsies are done for all kinds of non-cancerous things - it's just the term for taking a sample of tissue to examine.

"Pre-cancerous" does NOT mean the changes would ever become cancer. Most would resolve on their own.

This thread is a perfect illustration of why the "go for cervical screening or you'll die from cancer" messaging is so fucking damaging. (My anger is at the disinformation)

Go easy on yourself over the weekend. There is no reason to be getting upset right now.

You haven't frightened me don't worry, I've frightened myself more than anything anybody else has said (and almost all replies have been super positive) 🙈

I'm so sorry you had to go through that. Just heartbreaking when you have such small kids.

I've been asking for a hysterectomy for the best part of three and a half years now, predominantly due to pelvic organ prolapse and my uterus is on it's way down now too. I was outright refused the procedure and told I'm too young (25 at the time) dispite being certain I didn't want more children.

Did you need any chemo/radio after your hysterectomy or was that it? Not to downplay the severity of the operation ofc, my DM had a radical hysterectomy in her mid 40's and I remember it took her a long time to get back to normal.

I hope life is great for you and your kids now, having endured all of that.

I could have done with this thread 2 weeks ago. I received the awful letter and pamphlet saying I had HPV and low grade dyskaris. The grade was irrelevant to me as I knew that it could be higher grade at the Coloscopy. Thankfully, despite the smear detecting cell changes, the consultant plus 2 other HCPs and my chaperone could see NOTHING to show cell changes and were very through. Awaiting my Coloscopy was a tough week and I was a shell of my self with worry but even then I told myself if I had cancer it wasn't a life sentence.

AHCC supplement may be beneficial at clearing HPV and I am taking this plus immune system boosting supplements. If you smoke you should quit.

Also from reading other threads apparently 80% of population have HPV and it can lay dormant 10 - 20 years so no indication that its from a cheating partner unless neither of you had ever had sex with anyone else until cheating.

Do what you can to pass the time to your Coloscopy and know this is likely the worst bit as you will leave the Coloscopy clearer on what's going on and a plan for any potential next steps.

Of course it will.

Understandably you are over panicking.

This is very treatable and will require regular smear test which is good thing as you will be monitored closely.

My cousin had high grade 15 years ago. She was mid 20s and since had 3 children.

Still has annual check but all have been absolutely fine.

I had this 20 years ago and was told pre cancerous.

Had a colposcopy but no treatment. They just repeated my smear after 6 months then yearly after that for a while.

It went away by itself and they said if often does so please don't panic.

I remember at my smear the nurse explained that smears have changed, they used to look for cell changes and if found, test for HPV but now it's done the other way around. I just googled and interestingly this change was brought in during 2020. HPV is the catalyst for most cervical cancer so women should try to clear the HPV! You can buy home HPV tests though I've not researched reliability.

Teenagers have been getting vaccinated against HPV for about 10 years now so hopefully we can educate our daughters whilst seeing HPV cases begin to diminsh.

I also had CIN3 cells removed in 1999, had 2 full term pregnancies years later.

went for my 6 monthly smears for 5 years after (maybe 3 years) can’t remember now, with no recurrence.

Hope the procedure all goes well, do take someone to drive you home after.

This.

I had the same prognosis and the same treatment the year my first dc was born. I was utterly terrified but 16 years on I’ve never had an issue since. I also had dd 1 1/2 years afterwards. I did have to have a smear every year for 10 years afterwards but I believe that testing has improved and this isn’t always the case now.

I know it’s worrying but please be assured that this is highly treatable.

My mum had this in her 40s and she’s now 74. Went it, abnormal cells lasered away & no problems since.

i Just wanted to send you a big hug & say I’m sure it will be absolutely fine xxx

Hi OP. Sorry you're feeling so stressed about this - I was the same. First it was HPV and nothing else, following year HPV and low grade changes. The next smear still HPV and high grade changes. I had LLETZ and six months later the tests showed back to normal and HPV had gone. It was such a relief.

By the way, the operation is fine - some burning sensations, so not pleasant. But waaaay better than HPV and pre cancerous changes.

Hope it all goes well for you.

Hi op
i had stage 1a1 cervical cancer in 2010. Diagnosed off my first smear. I was treated with 2 lletz treatments and never had a problem since. The waiting round for the appointments and results are just shit but it’s not a given you have cancer and even if you have it would probably be early if you have no symptoms of and it’s treatable.
I really hope you get on ok x

I was very fortunate and didn’t need any further treatment. I have had prolapse issues ever since and have had one (not totally effective) surgery but it’s all still a bit fucked down there🤷‍♀️ Did have forceps for my eldest though and a very large second baby.

Life is very good thank you. I can still remember nights after my diagnosis wondering if I would see my children grow up but the NHS treatment was brilliant and both dses are now thriving at university.

I hope all is good for you and you can move forward. It’s hard enough managing small children without health worries on top💐

I've been having a read of the Jo's Trust website, it's super informative and I've spent half an hour or so having a look around the site. It hasn't been as reassuring as I thought it would be after seeing several testimonials from women who were diagnosed after a routine smear after having previous clear smears, so I've come away from there for a bit.

Talking of which, I've had.. ahem.. some stomach issues for a little while now including constipation and alot of wind and have just been questioning whether the two are linked with the dyskaryosis (sp?) My logical brain says it's probably just IBS and side effects of my medication (noritryptiline for occipital neuralgia)

Those of you who have had cervical issues did you get any stomach problems?

I actually have an MRI coming up this weekend for the occipital neuralgia. I've been under Guys for a few years now and the oral surgery dept has referred me on to neurology after three years of neck pain and headaches which we felt were all connected to my existing TMD.

I also had a mole removed last week which the nurse noticed on my arm when I went for the smear, so I was brought back in to the minor surgeries clinic and they whipped that off and sent it away. I was blissfully unaware that it looked anything but normal.

You've got to laugh haven't you. When it rains it pours.

I think all of the above is contributing to the overall anxiety of the situation. If it was just the one thing I could probably be a bit more objective but I just feel quite overwhelmed at the minute.

I'm amazed (and very encouraged) that early stage cancer can be dealt with by way of the LLETZ procedure, same way as the low/high grade cells. That is awesome. It's definitely not the death sentence we tend to think is it?

I also had high grade and eventually a cone biopsy. The fact that they picked this up now is a VERY good thing. See it that you have escaped a more serious diagnosis. The letter is frightening but honestly this is more common than you think. I'm now clear and have been for 5 years.

I love all of these positive outcomes!

I haven't actually received smear results letter in the post at all. I was expecting them but not concerned about any delay, then I got the call from the hospital booking the coloscopy so it was quite the shock.

I had high grade CIN3 dyskaryosis. Can’t remember how they removed it, but I didn’t need any further follow up treatment. It was probably psychologically easier back then, with no google, so I didn’t worry about it at all!

21 years later with 3 kids at secondary school and smears are now clear.

Hi OP I'm 4 weeks out from biopsy and cold coagulation. They were very quick I'm just waiting for a 6 month check up. I found the waiting for the treatment the worst bit really but the NHS were really quick my timeline from smear result to Colposcopy was 1 week then cold coagulation another 2 weeks.

I'm not going to lie the treatment wasn't nice but it's done now.

I had a clear smear then high grade severe dyskaryosis in 3 years. I had CIN 3 so it's possible.